The Diagnosis…
I try to remember when my son began to lose words. It seemed like I always knew how to reach him. I mean, yes, he had tantrums. He was a baby; you know? Besides, he was a boy, aren’t boys a little slower to develop? And his older brothers are quiet…we all are.
When my sister-in-law approached me about his development, I was stunned. Of course he talks. He talks all the time. At least that is what I heard myself say. Didn’t he? The more attention I began to pay, the fewer “I love yous” I heard. I know he used to call me Mommy. When did he begin to just stare out into… nothing? Joshua was moving backward, regressing. A well-check visit with his doctor sent my world into a tailspin. Just one word: Autism. That was almost seventeen years ago.
Today’s Reality…
I have worked as a behavior therapist for nearly three years now. In that time, I can count the number of African American children I have serviced on one hand. That is not to say that autism does not affect African American children. It is just to say that I serve a larger population of non-African American clients. As a mother of an African American young man diagnosed with autism, this is concerning. Why are we not seeing more African American families seeking therapy? Is it because of barriers to quality medical care? Is it because of lack of financial resources? Or could it be cultural beliefs? Statistics bear out one fact…African American children are being diagnosed later than their counterparts.
National statistics state that Autism Spectrum Disorder (ASD) affects 1 in 68 children today. This diagnosis affects boys nearly five times as often as girls. It is not determined by race. It is not determined by where you live. It is not determined by how much money you make. It is an equal opportunity disorder being diagnosed across these factors. However, when you get diagnosed is a factor that can have a profound impact on a child’s development. Early diagnosis and therapies to support language, communication, and social-skill development are important. These have been shown to strengthen speech, relationship building, and interaction with others in a meaningful way.
Diagnostic Disparities…
African American children statistically are diagnosed later than their counterparts. Because of this, they often miss opportunities for early intervention. The failure to access services during early childhood can require more intensive and extended therapies later in life.
Statistics show African American families often have fewer resources. These could be financial, access to care, or social supports. Education about this diagnosis can be a powerful tool in closing the diagnostic gap. Recognizing early signs of autism can help parents identify possible red flags. The Centers for Disease Control “Know the Signs Act Early” campaign provides important information. Their brochures highlight developmental milestones as well as developmental delays to watch from birth to age five.
Below are some red flags from the CDC that parents should know. For more information, visit “Facts About ASD” on the Centers for Disease Control web site.
Red Flags…
Some signs about children with ASD include the following.
- They may not point at objects they are interested in. (for example, not point at an airplane flying over).
- They may not look when you point at objects.
- They may show no interest in others.
- They may not look at you when you speak.
- They may like to be alone instead of with others.
- They may have a hard time understanding emotions. (for example; sad, happy, scared, angry, etc.)
- They may have a hard time saying what they feel. (for example; they are sad, happy, scared, angry, etc.)
- They may not like being hugged.
- They may look as if they are not paying attention when people talk to them.
- They may have a hard time talking to others.
- They may have a hard time playing with others.
- They may say the same thing over and over.
- They may have a hard time letting others know what they need.
- They may not play “pretend” games. (for example, not pretend to “feed” a doll)
- They may do the same thing over, and over again
- They may need to have things done the same way every time.
- They may have a hard time when things change.
- They may act unusual to the way things smell, taste, look, feel, or sound.
- They may stop doing things they once did. (for example, stop talking, playing with others, etc.)
Source: Centers for Disease Control and Prevention, 2016 – See footnote.
The information above does not address potential factors for diagnostic disparities suffered by African Americans. It can, however, bring awareness of potential signs of autism. This awareness can help families bring concerns to their pediatrician’s attention. Knowledge is power. Early detection and intervention can make a significant difference.
Today, my son is preparing for adulthood. We are working on vocational training with hopes of transitioning to college with educational supports. Is his story typical? Who knows? But shouldn’t it be?
For more information, see the resources below.
- Autism Speaks info about Autism and African Americans
- Centers for Disease Control info “Learn the Signs. Act Early”.
- Federation for Children with Special Needs
Bibliography
Centers for Disease Control and Prevention. (2016, March 28). Autism Spectrum Disorders (ASD)/Facts about ASD. Retrieved from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/facts.html